SCC, HPV 16+, right lymph node, primary source unknown

mhkapson
mhkapson Member Posts: 10 Member
edited September 2022 in Head and Neck Cancer #1

Hi all-

Wanted to give a quick update on my husband’s dx. Unfortunately, they have not been able to find the primary source. ENT is recommending putting my husband under and looking for spots to biopsy in his mouth + right side tonsillectomy if she can’t find any other potential source. Obviously, I understand the benefit of finding the primary source, but I also understand a tonsillectomy can be brutal on adults and there is a decent chance nothing will be found. We are trying to get a second opinion, but it doesn’t look like that can happen before the surgery would take place. Plus, I think this is pretty standard in the process when the primary source is unknown, so don’t want to waste precious time and cause delay. Wondering others experiences with similar dx and any recommendations or thoughts to consider. We are both a bit overwhelmed at the moment!

Thanks!

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    edited August 2022 #2

    Hello mhk and sorry you are going through more difficulties getting started into treatment. I think I am correct in saying many on here have gone into treatment not knowing the primary source. I would think in some cases it would be difficult to find. But I am sure it would be important to know if possible to provide treatment. I did a little search on this and found some information and credible websites for you to look at. Below is a quote from the Johns Hopkins site--It appears your physicians are using the same protocols please check out the quote and the website and see what you think--

    How is head and neck cancer of unknown primary site treated?

    The first and most important step of treatment is to find the location where cancer originated, as this will inform treatment planning.

    If the cancer location is successfully discovered, treatment will be initiated appropriate to the specific origin of the tumor.

    However, if no origin is discovered after imaging and more thorough examinations and biopsies, a treatment plan will be developed using the information gathered from the neck biopsies. HPV, EBV, and p16 testing will inform these decisions. Patients in this situation may undergo surgery or radiation therapy on the area where the neck mass presented and the areas where cancer most likely originated. They may benefit from chemotherapy as determined by discussion with the medical oncologists as part of the multi-specialty oncology team.

    Here is the link to the article--Head and Neck Cancer of the Unknown Primary--

    https://www.hopkinsmedicine.org/health/conditions-and-diseases/cancer-of-unknown-primary-origin


    Also here is a detailed article from Cancer.net-Squamous Cell Carcinoma of Unknown Primary in the Head and Neck with a lot of info to help possibly--

    https://www.cancer.net/blog/2020-04/squamous-cell-carcinoma-unknown-primary-head-and-neck-expert-qa-new-asco-guideline


    Also, we can't post search links on here because the site sees it as a security thing so if you just do a search for--

    "in head and neck cancer do they have to find the primary"

    You will find lots of more info on your situation.

    Let me emphasize though you don't want to hold back and waste time could you expedite a second opinion somehow? It's a delicate balance sometimes because you want to start treatment as soon as possible but you want it to be the right treatment as best as humanly possible. So sometimes a little delay may be acceptable to make sure you are comfortable. But don't get me wrong the decisions can be tough to make at times. The thing about H&N cancers especially is that once treated this is usually a one-shot deal where the best treatment is your original. It is not impossible to go back later and operate again or give radiation again but each time you are causing some collateral damage to the many functions of the area such as taste, swallowing, breathing, and saliva. That's what my Radiologist told me this is a one-shot deal because of the way they had to radiate my throat area it could not be done a second time.

    I hope the info I have put here helps a little, it seems relevant when looking at the sites.

    Wishing You the Best

    Take Care God Bless-Russ

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited September 2022 #3

    My husband’s radiation doctor requested that his head and neck oncologist find the exact location of the primary source so that he could target it and the exact location wasn’t clear from scopes and scans. It was either BOT (base of tongue) or tonsil area or nowhere. This was six years ago but my recollection is that the oncologist put my husband under and did some kind of scope and biopsy and found the primary source. It ended up not being a big deal. PS my husband didn’t need surgery. Just a biopsy to confirm location of primary source.

    Nancy

  • jlcasagua
    jlcasagua Member Posts: 1 Member
    #4

    Hi good night,

    I hope my comment is still on time. I had a right lymph none inflammation, the doctor did an ultrasound first, then aspiration biopsy and the source was confirmed with a cell carcinoma in the base of tongue using an endoscopy. I did not need surgery, just radiotherapy and chemotherapy.

    Hoe it helps.

    Jose Luis.

  • Dave705
    Dave705 Member Posts: 62 Member
    #5

    Had my tonsils removed 2 years ago when they were searching for my cancer. They found the tumor in the right tonsil. But, it was no picnic having them removed. Was 54 at the time. Radiation was a picnic compared to the tonsil removal. But finding out that’s where the tumor was, was worth the pain. 2 years clear of cancer. I wish you well in fighting this disease. Dave

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